Friday, December 21, 2012

When I started pumping with XPU (eXternal Pancreatic Unit) I changed from buying insulin pens to insulin vials. Every month I got two vials. Sometimes I worried about running out. The feeling of sucking out the last drops of a vial makes me sick to my stomach. Especially when I can't get a refill for another two days.

This month I realized something. There are 2,000 units in two vials. Two boxes of insulin pens are 3,000 units.

Since my prescription was about to expire I wondered, what if I filled my insulin pump using pens instead of vials? That way I would have more insulin for the same co-pay.

Filling my pump cartridge from a pen was easier than using a vial. All I did was tug the plunger down twice like always. Instead of filling the cartridge with air afterwards, I simply stuck the needle in the insulin pen gasket. With no air in the cartridge, I dialed the insulin pen to 60 units and pushed the button. Insulin forced the plunger up as it filled the cartridge. I repeated this until I filled my cartridge. Best of all my cartridge didn't get as many bubbles.

Having plenty of insulin in the fridge is a comforting feeling. Especially today. Doomsday. Oh noes!

Wednesday, December 12, 2012

One hundred thousand people in a stadium, so many people they look like pixels. Odds are 8% of them have diabetes. .01% of them have MG. What are the odds that any of them have thymoma cancer?

Well, we need more stadiums.

One in 1.3 million, about 400 people a year in the USA, are diagnosed with a thymoma tumor. I was one of them in 1998. Seeing dark circles on my CT scan changed everything. I never felt so alone.

Now I am celebrating the holidays with my family for the 14th time since I was diagnosed. Fourteen times of wrapping gifts. Fourteen times unwrapping them together. Fourteen holiday meals. Life is a gift, one that I need to stop and marvel at sometimes.

The downsides of having cancer are so obvious they aren't worth mentioning. The upside? Only a handful of people in the world know the joy of surviving thymoma. I get to be one of them. Fourteen years cancer free. That is reason enough to smile today.

Tuesday, December 4, 2012

I live with both diabetes and MG. Having diabetes in the internet age means I don't deal with this alone. The Diabetes Online Community, the DOC, offers powerful peer support for me. We connect through Twitter and Facebook and blogs like this one to support one another in coping with diabetes.

In the USA over 25 million people live with diabetes. We could fill 250 100,000 seat stadiums. We make up 8% of the population. If 8% of the people in a stadium stood up and yelled, everyone would hear the roar. If their family and friends stood up, well, almost everyone would be on their feet.

In the USA about 36,000 people live with myasthenia gravis. That is .01% of the population. That works out to about 14 in a 100,000 people. If 14 people stood up in this stadium, would you see them? Would you hear them yell?

Take a long look at the stadium photo. Fourteen people in 100,000 know what MG feels like. Just looking at that picture makes me feel lonely. Rare things are often prized, but not when it is a rare disease. Loneliness is a difficult challenge, but it isn't insurmountable. We live in the internet age and the internet is magical.

In bigger cities there are support groups for people with MG. Only, not everyone lives near a support group, and not everyone thrives in a group. Like me. My name is Marie and I am an introvert. I like people a great deal... in small, infrequent, doses. Support on the internet works best for me. The diabetes support I have received online has been a source of strength and joy in my life. I hope to see the same thing available to anyone who has MG and feels lonely. MG is hard and frustrating. I know what it feels like. Other people do, too.

I blog about MG. Are there other bloggers out there? If you blog about MG please let me know. Do you tweet about MG? If so, please join us. The small group of people I found on Twitter who live with MG:

These MG warriors know what you are going through. MG feels lonely, but you're not alone. That list is proof of it. In an imaginary stadium of 100,000 people let's get seats together. We might be a small section, but we can be strong together nonetheless.

Marie Smith

Marie Smith is a writer, cellist and talented public speaker. She is the author of Life Music: Lessons Learned At The University of Catastrophe. And her new book Life Etudes: Studies in Thriving At The University Of Catastrophe

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Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

If you email me your personal information will not be shared without your permission and your email address will not be sold. I hate spam. Even with eggs.